lbsteenwyk

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About lbsteenwyk

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I am a registered dietitian who works extensively with celiac patients. I'm heavily involved with 3 support groups, one adult group that I direct, another that I serve as nutrition advisor for, and the local chapter of R.O.C.K. My father has DH and my 4 year old daughter has CD, diagnosed by symptomatic improvement on the GF diet.

My 4 1/2 yr old takes takes her own snack every day. We attend a preschool in which all the children provide their own lunch and there is a no food sharing policy; so that works out well. They do provide snack, however, and it's almost always gluten. We always bring our own, even if the school snack does not contain gluten. The coop arrangement makes your situation a little more challenging.
I would enlist the help of the director in finding out the best ways to keep your daughter safe at school. Is there a way that you can communicate with the parent of the day? Is there a regular teacher that is assigned to the room as well who could be sure your daughter's needs are met? I would take lots of time to impress on the director of the program the need to keep your daughter healthy. If she acts as though this is going to be difficult, you may want to look for a different preschool.
The other thing I would do is work with your daughter to be responsible for her own snack. At 5 she should certainly be able to understand the concept of not eating gluten. If she's had some bad reactions, she may be quite motivated to stay away from it! Let her choose and pack her snack each day (from 2 or 3 choices that you provide). You could buy some colorful plastic containers and put stickers and her name on them to personalize the whole process. Impress upon her the need to only eat food that you provide. My daughter actually prefers her own snack; I've never had any difficulty with her wanting other kid's food at school or feeling left out. You may want to keep a bag or "special treats" such as cookies or cupcakes at school in case the need for a substitute arises.

I'd say the "basic" is her original rice mix:
2 parts rice flour
1/3 part tapioca starch
2/3 part potato starch
I always use brown rice flour in this mix.
I prefer the 4 bean mix for most recipes, especially conversions; but I still use the rice mix in some of my recipes. I keep both mixed up in my refrigerator.

Research in 2003 showed that 1 in 22 first degree relatives will have celiac disease. That means if you have celiac disease your child has about a 20% chance of having the disease as well. I know a woman who has 7 children - all tested positive for celiac disease through blood work.

The Manna from Anna (they've changed their name to Bread by Anna or something similar) makes 2 loaves in a bread pan in the oven or one large loaf in the bread machine. It is expensive, but truly an excellent bread.
I use the Gluten-free Gourmet Bakes Bread all the time; some of my favorite recipes:
Sweet Potato Cranberry Bread, pg 112 - I don't put the cranberries in b/c my dd doesn't like them, but it comes out fine anyway.
Yeast free zucchini cheese bread, pg 137 - I usually make this into muffins instead of a loaf. It is delicious!
Springy Corn Bread, pg 151 - we love this and it's super easy to make. Again, I usually make muffins.
Basic Millet Bread, pg 82 - this rises beautifully in the bread machine; I made this for our support group and everyone raved about it.
Basic Yeast-free Bean Bread, pg 132 - I make this all the time, but make it in a muffin pan instead to make hot dinner rolls. I mix up the dry ingredients ahead of time and then just add the liquid ingredients when I'm ready to bake them, they only take 15 minutes in the oven when you make rolls. You can also make these more nutritious by reducing the Four Flour Bean Mix to 1 1/4 cup and adding 1/4 cup each of millet, montina and amaranth. You can substitute Teff if you don't have one of the other flours. Everyone in my family loves these, even those who can eat gluten.
Happy Baking!

You can purchase gluten-free oats from:
Cream Hill Estates orGluten Free Oats. Our support group has made bulk purchases from both companies and our members have been using their products without problems. Of course they're not cheap; both companies will do special pricing for you if you have a large enough order.

Blood tests for celiac disease in children under 2 years are highly unreliable; your son should still have the full panel, but expect them to be negative or inconclusive. You will probably get a more accurate diagnosis from a duodenal biopsy. I see you have a ped GI appt monday; make sure the GI knows what he's doing - he/she should be geting 4-8 biopsies from the 3rd portion of the duodenum. Children often have patchy damage and the diagnosis can be missed if not enough biopsies are taken.
Children with celiac disease usually have dramatic results on a gluten-free diet - with improvement in 2 weeks, though it may take months to heal completely. I would also suggest a lactose free diet for the first 6 weeks, because celiacs with significant intestinal damage don't digest lactose well. At 9 months, your child should not be getting cow's milk products anyway.
Good luck in finding answers and relief for your son

The FDA requires that the source of HVP and HPP be disclosed. Sometimes this disclosure is in the "contains" statement at the end of the ingredient list. Or it may be listed directly after the ingredient. Most HVP/HPP comes from soy, but it can come from wheat.
MSG is gluten free.

There is an active celiac support group in Charlotte. Here is their website:
http://www.charlotte-celiac-connection.org/
Please note that Dr. Peter Green a well-known celiac expert will be speaking on May 13. Last year they had Ivor Hill speak and I went to hear him. Unfortunately, I won't be able to attend Dr. Green's talk.

My guess is this was a TTG - the most accurate test for celiac disease. Different labs have different normal/abnormal parameters, so it is best to confirm with your doctor which tests were done. You should get a copy of the lab results for your files anyway.

Welcome to the board!
Good for you for being so assertive with your child's physician! Doctor's can be quite hard-headed, but your case illustrates that they certainly can be wrong, especially when it comes to celiac disease!

With a positive test in your son it is quite possible your daughter has celiac as well. Tests can be inaccurate, especially in children under 2, so I would not discount celiac disease based on her test. It's unfortunate your in-laws aren't on board with this. What does your husband think about putting her on the diet? Your in-laws may have a more positive attitude if their son is supportive of trying the diet. If your son has been having a lot of symptoms, they may also become more supportive once they see how much the gluten-free diet improves his quality of life.
Have you thought about having your entire family go gluten-free? Then you would be trying your daughter on the diet by default. Children usually have a dramatic and quick response to the gluten-free diet, so you would probably see an improvement within 1-2 weeks. I put my then 2 year old daughter of the gluten-free diet due to symptoms. After my in-laws saw how much her health improved, they were totally on board with the gluten-free diet, even without a diagnosis. They still are extremely supportive, over 2 years later.
Another option is to wait 6 months and have her retested. Or you could ask for a biopsy now to see if she has intestinal damage. But you need to be sure you have a competent pediatric gastroenterologist do the procedure. Many doctors don't do enought biopsies and miss the diagnosis. They need to take 4-8 biopsies of the 3rd portion of the duodenum to get accurate results. Also, the pathologist who reads the slides needs to be aware of the more subtle changes that can occur in celiac disease, short of complete villous atrophy.

Bakerprincess:
Welcome to the board!
I have a 4 year old daughter who is also quite thin, though not as thin as yours. My daughter weighs 36 lbs and is 42 inches tall. Just in the past 6 months she has gained 6 lbs. Like your daughter, she is a VERY PICKY eater. I have torn my hair out trying to get her to eat more. Here are some of the things that have worked for us:
I let her dip her vegetables in honey; she likes this very much, even on brocolli (yuck!) and it gets her to eat her vegetables.
We make "peanut butterscotch" by mixing peanut butter and honey and eating with a spoon. Tons of calories.
We make homemade hummus with lots of olive oil added. Can you get canned garbanzo beans and tahini paste in Japan? Again this has lots of calories and is relatively healthy. We put it on gluten free crackers, tortilla chips, spread it on corn tortillas with cheese for quesadillas. Sometimes she eats it with a spoon.
She likes brown rice if she can sprinkle sugar on it. You probably eat a lot of rice in Japan.
We play games during meals where the food "talks" to her. We make up little stories about how the food wants to go down to her tummy to swim in a pool, etc. When she eats one bite of food, the rest of the food wants to go too, so it can be with it's friends . . . you get the idea. This really works well, silly as it sounds. You have to decide if you want to expend this much time and energy to get her to eat.
Remember that it can take up to 20 tries to get a child to eat a new food. We have finally gotten to the point where my daughter is starting to be willing to try new things; but it has taken a long time to get there! Finally at age 4 I am able to reason with her and remind her about previous experiences she's had where she tried a new food and liked it. I also praise her a lot when she does try something new, even if she doesn't like it.
I also have found that my daughter will fill up on milk and eat none of her food if I serve milk with meals. Could your daughter be doing the same thing with the Pediasure? We serve water with meals and have milk only with breakfast, bedtime snack and after a meal if she eats well.
Hope some of these ideas help. As a previous responder said, if your daughter is healthy, even though she's underweight don't worry so much. Most children now days are a little overweight; My daughter looks much thinner than all the other kids in her preschool; but I really don't feel she is out of the normal range for her weight.

We chose a daycare where all the kids bring their own lunch and they have a policy of no food sharing. We have never had a problem. They do provide morning and afternoon snacks for the kids, but I provide my child's own snack. Having a different snack has not been an issue. I allow my child to have juice at snack time. My advice is to find another daycare. Good ones do exist, though you may have to pay a little more. Going to a daycare where lunch is not provided by the school has worked very well for us. I would be frank with your school that if they cannot do a better job in protecting your child from gluten exposure, you will take your business elsewhere. Frankly, they may not care, because it will be less of a headache for them not to have to provide a special diet for your child. A daycare where food is not provided will probably mean much less worry for you and much less time spent dealing with the cook at the daycare.
Good Luck!

This is regarding the yogurt question -
Many people with newly diagnosed celiac disease are lactose intolerant, simply due to malabsorption caused by the celiac disease. When the intestine heals, the lactose intolerance may resolve too. So, I would take your son off dairy for 3-6 months and then reintroduce dairy slowly. Start with lower lactose products like cheese or yogurt and see what his response is. He may not need to be on a dairy free diet permanently.

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